I’m tired too. It’s a seemingly innocent statement that induces a fit of internal rage and frustration in those that are suffering from chronic fatigue. Unfortunately, these three words convey a complete and utter lack of understanding of the severity of chronic fatigue and the impact that it has on the lives of those who suffer from it. It’s a statement that serves to do nothing but trivialise someone’s struggle.
Chronic fatigue is not just feeling tired. We would give anything to feel a normal level of tired. Being tired is considered a “good day” for someone suffering from chronic fatigue. So if we open up to you and tell you about our struggles please, for goodness sake, don’t reply with the words “I’m tired too”. You may risk physical injury if you do (I kid of course… sort of).
Okay, I know that I sound like I’m moaning but it’s hard for us not to overlook the fact that the person who uttered those three words is likely tired from doing an activity that warrants being tired. I know being tired sucks but if you suffer from chronic fatigue, it’s a completely different ball game. And it’s not one I would wish on anyone.
When you suffer from chronic fatigue, there is no let-up. Sometimes the fatigue is worse, sometimes it’s better. But it’s always there to some degree. There’s no reprieve. You might have just slept for 8 hours solidly but you will still wake up feeling as though you had no sleep at all.
The response our body has is also disproportionate to the activities we do. We’re talking basic, simple things here like standing up, sitting up and washing yourself. Things that should not be tiring can be exhausting to someone suffering from chronic fatigue.
We basically function each day feeling as though we are getting over the flu (or like we actually have the flu on a bad day). Just because we smile and get on with life doesn’t mean we are over it. We have simply learned to cope. We don’t have a choice in having chronic fatigue but we have a choice in how we react to it.
Here’s what it is really like to suffer from chronic fatigue. With some GIFs thrown in for good measure because if you can’t laugh, you will probably cry!
1/ You’re eyes sting so badly that it’s painful to keep them open
2/ You’re eyelids are so heavy that they exist in a permanent half-shut state
3/ You’re whole body feels as though it is a tonne weight
4/ It feels as though someone is sitting on your chest and crushing you
5/ Breathing is exhausting in itself
6/ You’re body aches from head to toe as if you have the flu and your throat is often sore
7/ Your head can feel like it’s about to explode at any minute
8/ You’re so tired that all you want to do is sleep
9/ But even if you manage to sleep loads, your body fails to recharge
10/ Sometimes you are so tired that you pass the point of being able to sleep
11/ Concentration is extremely difficult and our brain can be foggy
12/ Sometimes you are content simply lying in bed, staring at the walls in your room because that’s all you can handle
13/ Bright lights, loud noises and smells are often overpowering and can make us feel worse
14/ Over exerting ourselves can leave us feeling terribly nauseous and unwell
15/ Even talking can be exhausting, which is why socialising can be difficult
16/ Travelling in any form, even a simple car ride, can be very detrimental to our health
17/ We can be having a good day and then all of a sudden we are overwhelmed by fatigue
18/ We suffer from post exertional malaise, which can happen up to 48hrs after an activity
19/ We face judgement from others… a lot
20/ It’s very upsetting when people don’t even try to understand what it is like
So next time someone opens up to you and tells you that they are suffering from chronic fatigue, here’s some useful dos and dont’s:
1. Listen to what we are saying.
2. Simply be there for us and offer support.
3. Learn the difference between sympathy and empathy.
3. Accept that we are saying “no” to events for good reason and realise we probably feel guilty and will be giving ourselves a hard time about it.
4. Make small gestures that will help us, for example offer to get us a glass of water or cup of tea.
5. Appreciate how difficult the simplest of tasks can be and help us out if you can.
6. Tell us that you get it and that you are sorry we are struggling.
8. Research our condition and gain a better understanding.
9. By all means show us latest research but don’t tell us about miracle cures and understand that diet is not a cure either.
10. Let us know that you know our struggle is real. Too many people make us feel like it is all in our head and that our symptoms are mental rather than physical.
Chronic fatigue can be a symptom of many illnesses, not just ME/CFS, and can last for months, years or sadly even for the duration of someone’s life. Do not underestimate it and the impact it can have on someone’s quality of life. It can get better for some but realise that if it does, it will not happen overnight. People suffering from chronic fatigue need the support and help of those around them. Be that person.
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